Re: Prosorba Column Therapy--Joanne

February 22, 2005

Thanks for replying to the message. I'm sorry it didn't work you.

That is a plus, that your RA factor dropped that much, but it would

have been better if it could have made you feel better.

My RA factor was normal. My diagnoses was based entirely on

symptoms, response to treatment and my SED rate and CRP were

elevated. I actually was having a rather nasty flare at this one

instance when I was getting a blood draw. Boy, I though my CRP was

elevated withOUT a flare!! It was more than doubled with a flare!!!

He wants me to consider the Prosorba Column Therapy because every

med he puts me on works only for a short time and then starts to

taper off quickly and requires higher doses. I started out with

10mg of Prednisone when all this started and over a two month period

was up to 100mg a day. Now, being a nurse, I know that's not good

for you for any length of time. So, I tapered myself off. It took

a long time to do it, and at times when I would come off of them, I

had to go back on them because of the flares. Now I only take them

as needed. Usually requires about 20-30mg loading dose to do the

job, and it only takes the edge off.

When I was on Remicade, I went every 4 weeks and my dose was up to

1400mg. It was failing fast. Finally we stopped it because I was

having more side effects than benefit. Now, I am on Enbrel. It

worked like a charm two weeks into it, then after about two months I

noticed things getting worse.

He wants to put me on injectable MTX. I don't even like taking the

MTX pills and I am maxed on those. Dose the injection have a

stronger effect?? I hear the side effects do!!

Well, I told him I wold think about it and give him my answer when I

see him next time (in two months). Heck, we are happy that I can go

two months between appointments!! Of course, I tell him that I

don't call when I should. I just tough it out. I have had days

where I just want to go to the ER to get the pain under control,

then don't because I know they are too busy anyway, they don't need

me in there too!! I know, I know, I should think that way. Heck, I

don't care if they would think that I was a drug seeker or not, but

I figure I can get through it, and I do. I hate being a burden on

anyone. I know they don't think that way, I know because I work

there, but I also don't want my family waiting in the waiting room

for hours on end either!! Look at me, I'm whining away!! :-)

Thank you for replying, Joanne. I do appreciate your input. How

are you doing since your husband left? That stress surely didn't

help you at all!! That is a true test of who you are, that you

finished those treatments!! Strong!!

Take care....Love and Prayers......Marina

February 22, 2005